Transcript Supporting Patient Self-Management 10-9-08

Supporting HIV Patient
Self-Management
The Evidence Base, Practice
Implications, and Provider
Support
Joseph Rukeyser, PhD
National Quality Center
Jenny Knight, FNP
Harlem Hospital Center, NY
Funded by HRSA
HIV/AIDS Bureau
The Problem
• Patients often have difficulty in taking care of the longterm, day-to-day management of their own health. They
may:
 Miss appointments or follow-up referrals
 Not follow diet or activity recommendations
 Take medications or supplements that interfere with
prescribed therapies
 Ignore or not recognize signs of adverse events or disease
progression
 Behave in ways that put themselves at risk including not
adhering with prescribed medical therapies
• Clinicians have limited time to address these issues
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National Quality Center (NQC)
Patients who are effective self-managers:
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Learn about their HIV disease
Practice effective communication skills
Actively partner with providers in decision-making
Practice action-planning and problem solving
Self-monitor symptoms and follow treatment
directions
Seek and follow expert medical care and advice
Use family, peer, and community support resources
Maintain emotional and psychological balance
Practice health-promoting behaviors
National Quality Center (NQC)
Helping patients be better self-managers can…
• Improve
 Patient health outcomes
 Patient health-promoting behaviors
 Patient self-efficacy
 Communication with providers
 Utilization of community resources
 Containment of health care costs
 The quality and efficacy of HIV care
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National Quality Center (NQC)
Providers Can Make A Difference
• Providers have key roles in supporting patient
self-management by
 Ensuring effective communication and education
 Collaborative goal-setting
 Shared decision-making
 Anticipating and planning for symptom and side
effects management
 Designing systems and support teams that aid
patients in developing and utilizing self-care skills
and resources
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National Quality Center (NQC)
Learning Objectives
• Define “patient self-management” and provider “selfmanagement support”
• Describe evidence supporting self-management by
patients with chronic illnesses (e.g., asthma,
diabetes, arthritis)
• Discuss the value of self-management in the chronic
care of patients with HIV/AIDS
• Review the HIV provider training curriculum:
“Making Sure HIV Patient Self-management Works”
• Discuss provider practice-based self-management
support interventions for patients with HIV/AIDS
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National Quality Center (NQC)
Growing Support for Patient Self-Management
“Increasing evidence shows that self-management support
reduces hospitalizations, emergency department use, and
overall managed care costs.”
“Physician support of patient self-management is one of the
key elements of a system’s-oriented chronic care model.”
Coleman and Newton. Supporting self-management in patients
with chronic illness. Am Fam Physician 2005;72(8):1503-10
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National Quality Center (NQC)
Patient self-management is…
“The capability of patients with chronic illnesses, in a
complementary partnership with their health care
providers, to manage the symptoms, treatment,
lifestyle behavior changes, and the many physical and
psycho-social challenges that they face each day.”
A composite of definitions in the literature
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National Quality Center (NQC)
HIV/AIDS is similar in some ways
to chronic illnesses
•
Potent antiretroviral therapy has improved the health and extended the lives of
many people with HIV infection
•
HIV shares similarities with other chronic diseases: the need to take
medications daily; regular office visits and monitoring; risks of treatmentrelated side effects;
•
But also important differences: constant threat of acute illness; stigma, drug
resistance; infectious nature; marginalization
•
HIV therapy is constant, life-long, and treatment strategies must be
sustainable and flexible to meet changing situations
•
HIV patients have day-to day responsibilities for their care
•
Providers must provide support, motivation, tools, and education
Aberg J. The Changing Face of HIV Care: Common Things
Really Are Common. Ann Intern Med. 2006;145(6):463-65
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National Quality Center (NQC)
Patient self-management is used
effectively in many chronic illnesses and
is an essential component of the Chronic
Care Model (CCM)
Funded by HRSA
HIV/AIDS Bureau
Asthma
Studies of asthma patient self management programs show that they
can…
 reduce morbidity
 improve lung function
 enhance feelings of self control
 reduce absenteeism from school and number of days with restricted
activity
 reduce nocturnal episodes
 reduce visits to an emergency department
Guevarra P et al.Effects of educational interventions for self management of asthma in children and adolescents: a
systematic review and meta-analysis. BMJ 2003;326:1308-13
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National Quality Center (NQC)
Arthritis
• In multiple randomized trials, the Arthritis Patient Self-management
Program has been found to improve
 health behaviors
 self-efficacy
 health status
 cost savings1,2
• Patient self-management of arthritis reduced anxiety and depression
and improved participants’ perceived self-efficacy to manage
symptoms.3
1. Lorig K and Holman H. Arthritis Self-Management Studies: A Twelve-Year Review.
Health Education Quarterly. 1993;20(1):17-28
2. Lorig K, et al. Arthritis Self;Management Program Variations: Three Studies. Arthritis Care and Research. 1998;11(6):448-454
3. Buszewicz M et al. Self management of arthritis in primary care:
randomised controlled trial. BMJ 2006;Online First bmj.com
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National Quality Center (NQC)
Diabetes
 Most well-studied disease category
 Group visits and individualized problem- solving are
effective self-management tools resulting in
• Improved recommended prevention behaviors
• Improved health status (SF-36)
• Fewer specialty and ED visits
• Enhanced patient satisfaction and self-efficacy
• Improved HbA1c levels
Wagner E et al. Chronic care clinics for diabetes in primary care. Diabetes Care 2001;25:695-700; Anderson R et
al. Patient empowerment: results of randomized controlled trial. Diabetes Care 1995;18(7):943-949
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Systematic Review of 39 Diabetes Studies
Using at least one component of the CCM
• 17 of 20 studies that included a patient selfmanagement component found positive
outcomes
 ↓ health care costs
 ↓ length of hospital stay
 ↑ health outcomes (e.g., improved HbA1c)
Bodenheimer T, et al. Improving Primary care for Patients with Chronic Illness:
The Chronic care Model, Part 2. JAMA. 2002;288(15): 1909-1914
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National Quality Center (NQC)
The body of evidence shows that
supporting patient self-management…
 reduces hospitalizations
 reduces ER visits
 reduces overall managed care costs
 increases patient satisfaction with care
 improves health outcomes (e.g.,)
• Glycemic control
• Nocturnal asthma symptoms
• Blood pressure control
Coleman and Newton, Am Fam Physician, 2005
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National Quality Center (NQC)
Self-management support includes…
• Collaborative goal setting and shared decision
making
• Regular follow-up, monitoring and assessing
progress towards achievable goals
• Education and tools tailored to patient’s unique
needs and social and cultural environment
• Monitoring, enabling, and revising implementation
• Integrating support to the individual’s regular source
of medical care and monitoring their effects on a
patient’s health
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National Quality Center (NQC)
Clinicians can provide increased support
of patient self-management by…
• structuring patient-physician interactions to include collaborative
goal-setting, problem-solving, and decision-making strategies
• using self-management support evidence base to guide daily
practice and decision-making
• making office system changes optimizing the care team, use
planned interactions
• providing self-management education and referrals, linking patients
to community self-management programs and other resources.
Coleman M. and Newton K. Supporting Self-management in Patients
with Chronic Illness. Am Fam Physician. 2005;72;8:1503-10.
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National Quality Center (NQC)
Sample Patient Self-Management
Supports Clinicians Can Use
• Patient education classes, resource referrals and reading
• Tools for action-planning, information organization, and
decision-making
• Collaborative communication, information sharing, and
resource development
• Help in collaborative goal-setting, action-planning, and problem
solving
• System supports (group visits; reminder calls; pre-MD visit,
medication guides, provider team coordination)
• Clinical symptoms, medication, and side-effects self-monitoring
guides
• Ongoing assessment and adjustment to changing
circumstances and behavior-change needs
• Use of the 5 A’s: Ask, Advise, Agree, Assist, and Arrange
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Few Self-Management Studies
with HIV Patients
• No strong evidence yet of efficacy
• Only pilot studies have been done
• Increase in self efficacy correlated with increase
in CD4 count and decrease in viral load*
• More studies needed of in-office interventions
and system supports
*Ironson G, Weiss S et al(2005) The impact of improved self-efficacy on HIV viral load and distress in culturally
diverse women living with AIDS: the SMART/EST Women’s Project. AIDS Care 17:222-36
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National Quality Center (NQC)
Stanford HIV S-M Education Pilot Study
• Pilot test of a group self-management course for HIV/AIDS patients
 ↓ symptom severity index in the education session group and ↓
in the control group.
 ↑ self-efficacy in the educational group and ↓ in the control
group.
 secondary outcomes (pain fatigue, psychosocial symptoms,
changes in stress/relaxation exercises, and HIV/AIDS
knowledge were not significantly different in the two groups.
• No follow-up of this pilot study reported to date.
Gifford A, Pilot Randomized Trial of Education to Improve Self-Management Skills
of Men with Symptomatic HIV/AIDS. JAIDSHR. 1998;18136-144.
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National Quality Center (NQC)
Limitations of Patient
Self-Management Education
In a meta-analysis of 71 trials of self-management education across
several chronic disease states the authors concluded that…
• While self-management education programs are conceptually
appealing, the findings of this review suggest that not all selfmanagement education programs for all diseases or for all patients
are effective.
 Patient self-management programs which tailor educational content
and methodology to individual patients and which are integrated into
medical care may prove to be more effective than structured selfmanagement education courses, for which only specific patient
subgroups may be ready.
Warsi A, et al. Self-management Education Programs in
Chronic Disease. Arch Inter Med. 2004;164:1641-1649.
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National Quality Center (NQC)
Potential Barriers to Initiating Patient
Self-Management Support Programs
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Comfort with traditional model of care
Reluctance to lose “control”
Time constraints
Unpreparedness for dealing with “non-medical”
issues
Reimbursement concerns
Lack of skills training
Insufficient support from management
Unfamiliarity with the evidence basis
National Quality Center (NQC)
Getting Past the Barriers
• Join efforts with other self-management
supporters
• Use in-services and study groups to get “buyin” from clinicians and administration
• Create multi-disciplinary teams to plan and
implement programs
• Share the responsibilities of patient support
among members of the health care team
• Use community resources
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National Quality Center (NQC)
www.NationalQualityCenter.org
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National Quality Center (NQC)
Provider Training Curriculum
• “Making Sure HIV Patient Self-Management Works: A
Training Workshop for HIV Care Providers”
 Curriculum guide for workshop facilitators
 NQC/ NYSDOH AIDS Institute/ HRSA HIV/AIDS Bureau
 Pilot tested with a range of care providers
 An activity-based guide to preparing providers to support patients in
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their own HIV self-management
Interactive and experiential learning activities
Targets knowledge, attitudes and behavior change
Hands-on practice in the use of patient action-oriented selfmanagement supports
Guide to 8 facilitator-led activities
National Quality Center (NQC)
Activity 2: Defining Self-Management
• Health care self-management continuum
• Share personal experiences with managing
health and health care
• Develop an operational definition of selfmanagement
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National Quality Center (NQC)
Activity 3: Patient Case Study
• Andy and Zeke
 Brothers with similar health challenges
 Different degrees of success with self-management
 Different health outcomes
 Different concerns
• Small group brainstorming activity
Case study based on Bodenheimer et al, JAMA 2002
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National Quality Center (NQC)
Activity 4: The To-Do List
• Small group activity to plan an approach to
collaborative care with Zeke
• Primary care issues
• Assessing Zeke’s concerns, needs, strengths
and priorities
• Zeke is HIV-positive
 How does this affect his care?
 What are the key management tasks?
 Whose responsibility? (Zeke, providers, both?)
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National Quality Center (NQC)
Activity 5: Patient Self-Management Supports
• Identifying the need for patient selfmanagement supports
• Brainstorming the most appropriate supports for
individual tasks
• Review of patient self-management supports
 Patient-centered
 Provider-centered
 System-centered
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National Quality Center (NQC)
Activity 6: Action Planning Role Play
• Triad
 Provider
 Patient: Zeke
 Observer
• Focus on developing collaborative goal-setting
and action-planning skills
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National Quality Center (NQC)
Action Planning Worksheet
Patient Name:______________
Physician Name:______________
Assess patient’s primary concern or problem:
(e.g., “What is your greatest concern now?”; “What one thing would you most like to change?”)
_________________________________________________
Explore patient’s feelings about the problem:
(“What do you think makes this so hard for you?”; “How will you feel if things don’t change?”)
________________________________________________
Identify patient’s goals:
(“How would you like the situation to change?” “What one thing do you want to change?”)
________________________________________________
Brainstorm solution ideas:
(“What do you think might work or help you to reach that goal?”; How do you think you might solve this
problem?”; ”What have you tried in the past?”; “How might I or someone else help you to do this?”)
________________________________________________
Choose a solution and Action Steps to try:
(“What do you think you could do?”; “When would you do it?”; How often do you think you could do that?”;
What will you do to get started?”)
________________________________________________
Estimate self-efficacy [Use the “Getting to 7” Scale]:
(“Does this sound like something you can do?” ”Are you sure this is something you want to do?” “On a scale
of 1 to 10 how likely is it that you will actually be able to do that?” )
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National Quality Center (NQC)
Curriculum Summary
• Training curriculum goals:
- To meet the needs of providers in developing individual
understandings and expertise in patient selfmanagement
- To create a core group of interested and informed
providers
- To assist providers in initiating or further developing
practice-based patient self-management support
programs
- To improve the quality of HIV/AIDS health care by
fostering collaborative interaction between patients and
their providers in support of increased patient selfefficacy and self-management
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National Quality Center (NQC)
Curriculum Summary
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Targeted toward a range of care providers
Modular
Interactive
Experiential
Learner-centered
Brief (~4 hours)
Model for collaborative approach
National Quality Center (NQC)
Conclusions
• Patient self-management in chronic disease
care can improve patient health outcomes and
reduce health care costs
• HIV care is more similar to chronic care now
• Clinicians play an important role in supporting
patients taking greater responsibility for their
own care
• Resources are available to assist clinicians in
supporting patient self-management
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National Quality Center (NQC)
Selected Resources
• Living Well with HIV and AIDS. Gifford A. et al. Bull Publishing
Company. 2000
• Living a Healthy life with Chronic Conditions. Lorig K. et al. Bull
Publishing Company. 2000
• The Art of Empowerment. Anderson B and Funnell M. American
Diabetes Association. 2000
• A Guide to Consumer Involvement. NYS DOH AIDS Institute and
HRSA HIV/AIDS Bureau. 2006
• Making Sure Your HIV Care is the Best it Can Be: A consumer
training curriculum. NYS DOH AIDS Institute. 2005
• Making Sure that Patient Self-management Works: A provider
training curriculum. NYS DOH AIDS Institute. 2007
• www.hivguidelines.org
• www.ihi.org
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National Quality Center (NQC)
Selected References
Aberg J. The Changing Face of HIV Care: Common Things Really Are Common. Ann Intern Med.
2006;145(6):463-65
Anderson R et al. Patient empowerment: results of randomized controlled trial. Diabetes Care 1995;18(7):943949
Anderson R. Patient Empowerment and the Traditional Medical Model. Diabetes Care. 1995;18(3):412-5.
Bodenheimer T, et al. Improving Primary care for Patients with Chronic Illness:The Chronic care Model, Part 2.
JAMA. 2002;288(15): 1909-1914
Bodenheimer T, Lorig K, Holman H, et al. Patient Self-management of Chronic Disease in Primary Care.
JAMA.2002;288(19):2463-2475.
Buszewicz M et al. Self management of arthritis in primary care: randomised controlled trial. BMJ 2006;Online
First bmj.com
Coleman M and Newton K. Supporting Self-management in Patients with Chronic Illness. Am Fam Physician
2005;72:1503-10.
Glasgow R, Davis C, Funnell M, et al. Implementing practical interventions to support chronic illness selfmanagement. Jt Comm J Qual Saf. 2003;29(11):563-74.
Gifford A, Laurent D, Gonzales V, et al. Pilot Randomized Trial of Education to Improve Self-Management Skills
of Men with Symptomatic HIV/AIDS. JAIDSHR. 1998;18:136-144.
Guevarra P et al.Effects of educational interventions for self management of asthma in children and adolescents:
a systematic review and meta-analysis. BMJ 2003;326:1308-13
HRSA HIV AIDS Bureau. Self-Management and the Chronic Care Model. HRSA CARE Action. January 2006.
Ironson G, Weiss S et al(2005) The impact of improved self-efficacy on HIV viral load and distress in culturally
diverse women living with AIDS: the SMART/EST Women’s Project. AIDS Care 17:222-36
Lorig K and Holman H. Arthritis Self-Management Studies: A Twelve-Year Review. Health Education Quarterly.
1993;20(1):17-28
Lorig K, et al. Arthritis Self;Management Program Variations: Three Studies. Arthritis Care and Research.
1998;11(6):448-454
Wagner E et al. Chronic care clinics for diabetes in primary care. Diabetes Care 2001;25:695-700;
Warsi A, Wang P, LaValley M, et al. Self-management Education Programs in Chronic Disease. Arch Intern Med.
2004;164:1641-1649.
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National Quality Center (NQC)
Integrating Patient Self Management into
Clinical Practice
Harlem Hospital
New York City
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National Quality Center (NQC)
Harlem Hospital
• Our team was part of a one-year national learning
community sponsored by the Institute for
Healthcare Improvement on patient selfmanagement (included 20 sites, 2 other HIV)
• The Family-Centered Care Program (FCP) was
our target population
• Participated in extended follow-up project to
measure sustainability of change
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National Quality Center (NQC)
Population of Focus
• 25% of FCP patients are
recent immigrants from West
Africa
• The remaining 75% of FCP
patients are predominantly
African-American or Hispanic
• Many face legal, linguistic and
cultural barriers to care
• The self-management model is
well-suited to assist these
patients in overcoming barriers
and achieving better health
outcomes
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National Quality Center (NQC)
Introducing Self-Management
• Developed a goal setting tool to set a patientdriven healthcare goal and develop an action
plan during the clinic visit
• Developed a model to accomplish this within
the time constraints of the clinic setting
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National Quality Center (NQC)
My Action Plan for Better Health
Harlem Family Center
This month I will:
Improve my food
Choices
Describe it: (How, where, what, when, how
often)
Reduce my stress
Take my meds everyday
Attend a support group
Exercise more often
Follow up with a medical
appointment
(go to the dentist)
Cut down or stop
smoking (or drinking or
drug use)
Other:
Barriers (what might get in the way):
Plans to over come barriers (what could you do
to handle the barriers?):
On a scale of 1 – 10: How important is this goal:
________
(1 = Not important at all, 5 = somewhat important, 10
= the most important)
On a scale of 1 – 10: How sure am I that I can
make this goal: ______
(1 = Not sure at all, 5 = somewhat sure,
10 = 100% sure)
Follow up Plan:
Signature:
Clinician Signature:
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National Quality Center (NQC)
Refine Goal Setting Delivery
Implement – Goal
Setting Delivery
Design
Optimize Goalsetting in
Mom/Baby Clinic
A P
S D
Cycle 4: Expand approach to two
RN/Provider teams in Adult HIV clinic
A P
S D
Cycle 3: Team approach implemented in Mom/Baby
Clinic. Case manager plays role in supporting plan
Cycle 2: RN uses goal-setting tool with patients prior to provider
Visit at one clinic session. Provider reinforces goals/plan
Cycle 1: Providers use goal-setting tools with patients
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National Quality Center (NQC)
Team Approach
• Piloted in Mom-Baby Clinic
 Later expanded to several providers in ID Clinic
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Nurse sets goal with pt during triage
Provider reviewed goals with pt during visit
Case manager available to reinforce goals
Goal and action plan filed in patients’ chart
National Quality Center (NQC)
Goal-setting was Patient-Driven
• Easier than expected to generate goals from
patients
• Encouraged the patient to identify the goal
themselves, come with action plan, identify
barriers, come up with solution that worked
for them
• Skills included: asking opening ended
questions, reflective listening, summarizing
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National Quality Center (NQC)
Impact of Goal-Setting
• Can solve impasse around behavior change
• Gives providers deeper understanding of the
patient
• Improves relationship between patient-nurse
and patient-provider
• Empowers pt to make needed behavior
changes, or at least think about them if they
are not ready
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National Quality Center (NQC)
Case Study: Improving Adherence
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37 yr old female with AIDS, newborn at home, with recent
illnesses, weight loss, and depression. Stopped taking
her meds.
Goal: “To take my medicines every morning after eating”
Barriers: “Tired of taking pills”
Plans to overcome barrier: “Think about tomorrow!”,
“Remind myself why I am taking them”
Follow –up: Reported 100% adherence on self-reported
follow-up survey; a more positive outlook
Objective measures: CD4 increased from 153 to 360
and VL decreased from 15,400 copies to undetectable;
weight increased by 13 lbs
National Quality Center (NQC)
Case Study: Substance Abuse
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28 yr old with HIV, relatively medically well, but with
depression, active marijuana use, multiple missed clinic
visits, and chaotic life circumstances. Active ACS case:
all three kids in mandated foster care
Goal: Stop marijuana use to get children back, “must
have clean urines”
Barriers: friends, depression, lack of activities
Plans to overcome barriers: attend parenting classes,
attend drug support group, take meds for depression
Follow-up: additional barriers identified as drug
supplying boyfriend and drug-infested neighborhood
Objective measures: persistently positive urines; but
improved compliance with follow-up visits; VL initially
showed a significant decrease (though not maintained);
CD4 stable
National Quality Center (NQC)
Case Study: Coordination of Care
46 yr old male with AIDS with hx of substance use
and poor adherence.
• Returned to NYC 8/06 after several months of
incarceration in Virginia with CD4 277 and VL <50
and reengaged in care
• By 11/06 CD4 180, VL > 100,000. Pt was at the
hospital daily attending support programs (HATS,
COBRA, HABARI, Harm Reduction, Nutrition, Hep
C)
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National Quality Center (NQC)
Setting a Goal
• Held case management meeting with all
programs, provider and patient
• At that meeting developed goal and action
plan with pt
• Goal: Take medications every day
• Plan: Take my pills every morning at home
after breakfast
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National Quality Center (NQC)
Problem-Solving
• Barriers: Forgetting/Frustration/Substance Abuse
• Plans to overcome barriers:
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Keep dose in bag/jacket
Check in with HATS (adherence support daily)
Continue 1:1 counseling with Habari (Housing, psych referral)
Continue 1:1 counseling with Harm Reduction Program
• Follow up:
 At next medical visit, pt reported 100% adherence
 1/07 CD4 233, VL 2,880
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National Quality Center (NQC)
Presenter Contacts
Joseph Rukeyser, PhD
[email protected]
Jenny Knight, FNP
Harlem Hospital Center, NY
[email protected]
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National Quality Center (NQC)
National Quality Center (NQC)
NYSDOH AIDS Institute
90 Church Street—13th Floor
New York, NY 10007-2919
888-NQC-QI-TA
[email protected]
NationalQualityCenter.org
Funded by HRSA
HIV/AIDS Bureau